Bathtime

Gave Teddy a bath to ring in the New Year nice and clean. Baths for Teddy are a bit different. His dressings cannot get wet at this point, and even once everything heals up nicely, he still won’t be able to sit in a bath with water covering both his bottom and his PD Catheter.

So he’s on sponge baths for now, and will be taking showers once his catheter heals up.

Um, neither of us prefer this method of getting clean.

Still, it gave me a chance to take some nice pics.

Teddy
Teddy
Teddy
Teddy

Preemie Prefold
So this is a preemie size prefold, and also a picture of how he has NO BODY FAT. Look at that skin bunching up on his leg! He’s over 6 lbs at this point…

Broviac
The Broviac. Notice that mommy did a TERRIBLE job of rinsing off the Betadine during this morning’s dressing change.

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Christmas Eve

On Christmas Eve, we celebrated the first day since he was 5 days old that Teddy hadn’t had to cry because someone was hurting him. (All things considered, he had only had two days without someone torturing him – the two full days we were home.) My poor baby was 4 weeks old and celebrating his third pain-free day.

Christmas
Christmas Day

Discharge – December 23

So, Thursday was a pretty uneventful day. Urology visited us to remove the nephrostomy. This left a small hole in his side, about the diameter of a pencil, which they did NOT stitch, but merely taped (with one piece of tape) a gauze pad over it. They seem to have such a casual attitude towards this hole that leads directly to my son’s only functioning kidney, but apparently, it really is not much of an infection risk. And it is already closed up.

The rest of Thursday, we just hung out. He ate, he peed, he slept.

Friday morning, we started the huge list of things we’d need to do before discharge, which mostly involved people talking to me. I changed his Broviac dressing under supervision, I learned again emergency PD dressing procedures. We scheduled clinic days, we scheduled home health nurse visits, we scheduled his next visit with our family doctor. (I tried to lobby against the necessity of this one, since he was going to be seen by a nurse on Mon and by nephrology on Weds, but it’s one of those “required” things.)

I got our prescriptions, two of which they messed up. Heparin syringes for Broviac flushes daily, sodium bicarbonate and sodium chloride, which he takes 2 and 3 cc of twice daily, antibiotic which he takes once daily to prevent UTIs, and a multivitamin which he throws up once daily. I will have to remember to transfer those to our local compounding pharmacy.

I explained that I didn’t want him to get the Hep shot, and then got two separate lectures about that, including the fact that we should all get the flu shot, and finaly said that we’d do that through our family doctor. Then it was the RSV shots, which I also didn’t think he needed. I had JUST read the CDC website about RSV and the official opinion of the CDC is that he really doesn’t need them. The neonatologist would not budge, and though I could have pushed more, I really just wanted to go home. So we had everything else finished up, and waited another 3 hours for that shot to come up from the pharmacy.

As she’s drawing it up, she says that it probably won’t be covered by insurance because he doesn’t really “need” it. Yeah, THANKS. $900 per shot and they are “supposed” to get them monthly. sigh.

And then we were free to go. Our nurse was anxious to get us out of there, and basically had us kind of sneak out without escort.

Going Home
In carseat in car!

And now we are home.

Essentially, Dr. Brophy (nephrology) doesn’t think that his kidney will hang in there for too much longer, but of course, we could be surprised! He expects that either we’ll go in for clinic one day and his labs will be bad enough that they’ll admit him OR what he sees as more likely is that things will just start to make a gradual slide and we’ll be able to ease into things a little. I guess we’ll see.

Pouch

loves the pouch. mama loves wearing him.

Dec 21

So…

Teddy did his high heart rate thing 10-midnight last night. His heart rate starts to go up, then he gets agitated (or sometimes vice versa) and it goes WAAAAY up, and I think it bothers him. Certainly something stuck in one of my heart valves would make me agitated a bit, right? So we were trying to get him settled and finally did so around midnight.

At 4, the nurse needed to put in a new IV for him, because they needed to be able to start fluids in anticipation of surgery, he needed an antibiotic via IV, and they couldn’t use the Broviac because of its malposition on his heart. Putting in the IV took four tries (three blown veins) and about an hour. *yawn* 30 minutes of pumping later, I napped for another half hour and had texted Randy to call me at 6. (Yes, Randy, I did fall back asleep a bit.)

At 6:30, I woke up when they turned on the lights (ok, and when the nurse called my name) to take out the stent in his ureter. I wasn’t concerned about him, but I was really super curious about the procedure. It was literally snip, snip (the stitches holding it in place) and pull. Over in less than 2 minutes.

Then there was a lull. I “watched” the remainder of my NICU Knowledge requirements. (required videos on baby care you have to watch before you can go home. lame and intended for first time parents who don’t read and never talk to other parents.)

At 10, I learned how to change the Broviac dressing and flush it with heparin, which I will need to do every 24 hours. Also during this time, about eight other people stopped to talk to me, and I’ve quite literally forgotten who they even were or why they wanted me. I was trying to keep a sterile procedure and couldn’t get my notebook/pen. They also did rounds during this, and I missed it.

At 11, I got the stats i usually collect from our awesome nurse, Cindy. BUN up again, to 68. Creatinine 2.8. They didn’t do electrolytes. Weight unchanged.

Yesterday after they pulled his NG, they decided to stop doing the shift minimum (this was Cindy’s doing) and just see how much he ate on his own, without being forced. He ate about 10 cc’s more than what his requirement had been for 24 hours. yay.

Let’s see…

Sleeping

The dialysis nurse and the dialysis nutritionist stopped by to chat and answer questions and talk to me about emergency PD Catheter procedures. (what to do if the dressing comes off, what to do if there is a hole in the catheter, etc.) We will schedule weekly appointments with them back here to check weight, change dressing, and do labs. Yesterday, Dr Brophy (nephrology) had said that he thought it would be GREAT if I went back to just nursing, though I’d still need to pump a few bottles every day to give him his supplement (protein powder). He said he wasn’t concerned any more about strict input/output numbers, but would still want me to keep track of how long he nursed and how many wet diapers, and we’d measure how he was doing with weight. I clarified today that he meant we’d weigh him to see if he was growing, not weigh him before/after feedings to see how much he’d eaten. Yay.

They talked about his catheter and placement a bit, and issues like swimming, bathing, rolling over (he might not), etc. It will become less prominent over time, and should last him until transplant. (and transplant IS the goal now.)

Also confirmed that if his BUN sneaks up past 80, they’ll start dialysis right away and we will NOT be going home.

He had and failed a hearing test. (kidney issues and hearing issues often go hand in hand – they are formed at the same time – and plus I guess some of the medicine he’s been getting can also damage hearing. Um, THANKS for telling me that in advance…)

I went to lunch and while I was gone, his IV slipped out of place and out of his vein so that the IV fluid (which was turned waaaay up to make up for the fact that he hadn’t been allowed to eat since 9 am) was pumping into his tissues in his hand and arm. His arm and hand were REALLY swelled up. The nurse caught it right away and pulled the IV and replaced it (with just ONE poke) in the other arm, and then they had to give him some medicine in SIX shots that helps the fluid reabsorb instead of sitting around all puffy in his skin. Um, he didn’t like that.

Flouroscopy at 2:30. It’s like a VCUG (though when I asked the radiologist, he said it was completely different, but I think his definition of “different” and mine were, well, different). Shoot contrast dye into his nephrostomy (the drain tube he pees out of), and see where it goes.

Flouroscopy
How they hold babies still for flouroscopy. He was snug as a bug in a rug… slept thru it.

It went where it was supposed to, sort of. The kidney drained (yay) and the bladder filled. Then it immediately bounced back into the right kidney. That’s the reflux – his urine doesn’t stay in his bladder, but goes back up the ureters into the kidneys – and that’s what caused this problem in the first place. Except now they’ve fixed the problem that was preventing the left kidney from draining, so that should prevent further damage to the left kidney. The radiologist was really concerned about the reflux on the right side (which is like level five, or whatever level is the worst one) because he was worried about causing further damage to that kidney. I don’t think there’s much additional damage that could be done. It’s small and nonfunctional. (the left side still has reflux, too, but now that it also has the ability to drain, it’s not as big of a concern.) *shrug* So we walked out of there not really sure if that was a good result or a bad result.

Dr. Cooper stopped by 5 hours later and said he thought it looked GREAT! He actually was going to pull the nephrostomy right then and there, except Teddy was in surgery at that time. They will do it in the AM.

He said the biggest risk right now is actually infection. A bladder infection, because of the reflux, would be carried immediately to the kidneys. A small UTI could easily wipe out his kidney entirely, so he’s on antibiotics and will be until he either outgrows the reflux, or they repair it surgically, or he gets his transplant.

Let’s see…

I spoke with Continuity of Care nurses (two of them) at least three different times. The last time was around 3, and I literally had to have her repeat herself about three times on everything she said because we kept being interrupted, and I was having trouble keeping up with her conversation. I was so tired physically and just at my end mentally.

We made a list in the system of the nurses we have liked and so when we come back (or if we stay), now they have an official record of the nurses we have requested be on our team. Including Cindy, the day nurse we’ve had all week who I am in love with.

I had an appointment with WIC. Because he will be considered “disabled” by the SSA once they process his application, he automatically qualifies for WIC to cover the cost of his expensive supplements, because they are considered to be infant formulas. So that should be an interesting experience – yes, we are now a WIC family, at least for a while.

They had been really uncertain about whether they’d get him in for surgery on the Broviac today. 4:00 was the earliest, but probably 7 tomorrow AM. Alright, so I headed to the WIC office and I’m there for 2 minutes, and surgery called our nurse and said they would be ready for him in 20 minutes. Of course. Five minutes later they called her back and said “ok, now.” yeah, so I ditched the WIC lady (who was NOT going faster despite my telling her I would need to go in just a few minutes) and literally sprinted across the hospital.

My uncle Steve has been here with me for a few days, and he was fortunately in the room with Teddy, holding him and praying with him while I was with WIC, because that kid was just a ball of starving misery. Oh my gosh, he was so angry. So we took him down to surgery, I did NOT get to meet the anesthesiologist this time (which made me a little upset, I like meeting the person who is literally in charge of my infant’s life), and we could hear him SCREAMING long after he was out of sight. Oh, poor baby.

So… surgery went well. 2 hours. He came back awake and still pissed. Got him settled, fed a bit (10 cc, but enough to make him happy), and comfortable. Slept for 3 hours, and just woke up now as I type this at 9:30.

I know this is a long update, but even so, I don’t think I’ve been able to adequately express just how much has happened today. Not just procedures, but information, and people stopping by with bits and pieces of information to process and remember and fit together, and… I’m going to sleep.

(going home now hinges on a) him peeing out his penis after the nephrostomy is removed b) BUN staying below 80 c) recovery from surgery going well and d) nothing else NEW going wrong)

Dec 17-20

Let’s see..

They started talking about going home! (after I asked.) We’re essentially just waiting for his labs to get worse, which we have been assured they will eventually. Likely less than a month (but that gives us plenty of time for miracles, right?). But we can wait at home as well as we can here. There’s still several hoops to go through before we can make that happen, but Nephrology has signed off and everyone else is working hard to get us there. But there’s no reason not to wait at home, right?

They were originally talking about transferring us to Blank, but then nephrology said, essentially, it’s home or stay here. And I agree. As nice as it sounds to be back in Des Moines, if he needs a NICU, he needs the NICU here, because here is where they can do dialysis if needed, and here is where the ped urologists are. There’s really not much the NICU in DM can do for him.

Teddy pulled out his foley over the weekend. Hooked it with his toe. Youch.

They discontinued the PM 60/40 and switched to a protein supplement (actually an adult protein powder that has only 1 ingredient: whey protein) that will go in half of his feedings, and the other half gets to be just breastmilk. He is getting typically all but about 30 cc by mouth these days, and we hope that this change helps that, too. Breastmilk is absorbed much faster and so babies eat more than they do with formula, so hopefully once we get this switch made, he’ll be hungry more often and we’ll be 100% oral again. Then the ng comes out and we have to start doing the salt supplements (both sodium bicarb and sodium chloride) by mouth, too.

His ng tube came out and he’s eating much better. (the nurse had a theory that she pushed with the doctors that he would eat better without the ng in at all, because sometimes it irritates them and they don’t eat as well. this seems, so far, to have been the case with Theodore.)

His nasal cannula came out, and he’s been doing well without it. All good signs.

The semi bad news is that he’s been having this heart problem where his heart rate goes REALLY high when he appears to be resting and calm (not agitated). This had them concerned about his heart, particularly since babies with renal failure often have heart problems, too. (and having another major organ with problems in it drastically reduces a baby’s chances of doing well on dialysis.) After an EKG, chest Xray, and cardiology consult, they believe that his problem is actually his broviac line. (like a more permanent IV line that goes directly into his heart.) It’s moved to where it’s not supposed to be. The bad news is this means another surgery, probably tomorrow, but the GREAT news is that it’s probably not a heart problem. In comparison, surgery seems awesome… I’d rather he have another surgery than have a heart condition, right?

Dec 13-16

Teddy Teddy

This week, we are in a holding pattern, waiting for the PD catheter to heal and waiting for him to grow. He’s back down under 5 lbs now.

Some nurses have been unable to get the broviac to draw. This is important, not only because I don’t want him to have to be poked more, but because potassium really needs to be drawn via a vein, not a heel stick, in order to be accurate. The process of a blood draw via vein is terrible and lengthy and they’ve blown out everything in both of his hands and the one foot that doesn’t have the picc line in it. I’ve been telling them that the trick is to push his shoulder forward, but the night nurse would not listen. The day nurse, however, did, and she got it to work fine. The nephrologist on rounds today said that, often, it’s because they have the baby’s chest propped up (like with padding under their upper back) and their head turned away when they put in the line, and so it will sometimes only draw when you replicate that position – which is EXACTLY what we’ve had to do to get it to draw. So, mystery solved, and as long as that info gets passed along at each shift change, or I’m present for all blood draws, it shouldn’t be a problem.

On Wednesday, they decided he needs more oomph, more liquid, and more salt in his feedings. His NG tube went back in, which is actually OK with me, because it means they can give him his salt supplements via ng instead of orally. Also, they decided to supplement the breastmilk with Similac brand PM60/40, which is some sort of special formula. I hate that.

They’re also going to put him on a minimum amount of food. Originally, they said 50 ml every 3 hours. That’s more than he has consumed in a single feed, ever. I think that’s actually larger than his stomach – I looked up how big is stomach probably is at this age and I’m pretty sure it was less than that. I protested and asked why not feed him whenever he is hungry (every 1.5 hours today), so they changed the order to eating whenever he wants, but a shift minimum. So at the end of a certain number of hours (8), if he hasn’t eaten “enough,” then they will give him the rest of his food via ng tube.

He also has been having desaturations, which means that the amount of o2 in his blood dips kind of low. When he’s asleep, he does periodic breathing (he breathes really really shallow for a period of time, then back to normal) and that makes the o2 drop. They were not concerned at first, then it got worse, and now they’re concerned. Last night around 10, they put in a nasal cannula (the tube that sticks up in your nostrils a bit) to keep him breathing. He still had some desaturations, but not nearly as much. But it makes him really mad, and he slept terribly. So I slept terribly.

NICU
His sleeping breathing pattern

Teddy
Cannula and NG

So they are a bit stumped about why he needs the o2 all of a sudden, but did a chest Xray, and he looks fine.

NICU
Warmer bed

NICU
Crib

By Friday, his charts now had pretty exacting instructions on how to draw from his Broviac line, and it was also starting to get passed along at shift changes that if you have questions, just ask mom. She knows about his complex diaper situation (he has two diapers, one for the nephrostomy, one for poop), she knows how to get the broviac to draw, she knows how to do the dressing on the nephrostomy.

He had his PICC line removed, and was down to: Broviac (in his neck, used for blood draws). Monitors (two sets). Foley catheter (for pee from his RIGHT kidney, so in other words, mostly pointless). Nephrostomy (for pee from his left kidney). NG (for feeding if needed). Cannula (for air). OK, that seems like a long list, but it’s MUCH shorter. And the NG and the Broviac aren’t hooked up to anything, so they don’t tie us down. The foley is only hooked up to the drain bag. Not bad.

His labs are looking pretty good. His electrolytes are bouncing around as they mess with stuff, but the BUN and Creatinine are slowly lowering. (creatinine is under 3 now, BUN is 42)


I think I’m less overwhelmed than I was last week, and have started to find my voice in all this. The doctors are very bossy here. I mean, they are clearly accustomed to being in charge and telling everyone what to do, and I am not saying that’s a bad thing… but though they ask if we have questions, they clearly don’t consider parents to be partners.